• DEMOGRAPHICS AND CONSENT

  • PATIENT DETAILS

  • Date of birth*
     - -
    2 digit day, 2 digit month, 4 digit year

  • CONSENT

  • Please read the consent form PDF below. This is best viewed on a tablet or laptop, using Safari or Google Chrome.

  • Please click "refresh PDF" if it does not initially appear

  • Consent to take part in this project: This means you can say NO

  • By signing this consent form, I acknowledge that and for the purposes of this project:

     

    • I freely agree to take part in this project
    • I understand that I can stop taking part in the project at any time
    • I have read, or have had read to me, the information provided about this project and understand what is involved including the use and indefinite storage of my personal, clinical and health information
    • I have had the opportunity to consider the information, ask questions and am satisfied with the answers I received
    • I give permission for my medical records to be accessed for collection of follow up information. I understand that the information collected will remain confidential.
    • I understand that the data may be analysed and reported in a way that does not link back to me for this project or future research
    • I understand that I may be recontacted by the research team to provide follow up information that may be relevant for this project

  • Consent to the collection of samples and creation of tissue resources

  • • I agree for the collection, storage and use of my tissue, fluids, swabs, stool samples (if able)
    • I agree to the creation, storage and use of tissue resources (and its derivatives) from samples that may be collected from me
    • I agree to the access of tissue samples sent to pathology for diagnosis
    • I understand that the samples and tissues resources may be analysed and reported in a way that does not link back to me for this project or future research field. 

        *         

  • Consent to future use of information, samples and tissue resources

  • I agree to my individual / more detailed data, samples and tissue resources being collected, stored and shared for any future research*

  • OR only these options:

  • i) Research projects that are closely related to this one*
  • ii) Research projects that are being done in Australia*
  • iii) Research projects that are being done by non-commercial organisations*

  • Consent to optional parts of this project

  • I agree to receiving regular contact from the NECST Registry to complete further follow up questionnaires*
  • I agree for the linking of my data to Commonwealth and/or State health and administrative datasets*
  • I agree that by allowing collection of my samples, their use may include the generation of genetic information by sequencing of my genome*
  • I agree and authorise the research team to contact my specialist or local doctor (general practitioner) on my behalf for the purpose of research and accessing only the relevant clinical and health information (e.g., past operation reports including images, pathology results, ultrasound or other imaging scans or correspondence regarding my current gynaecological issues) related to my endometriosis and/or adenomyosis care*
  • Format: (+61) 000-000-000.
  • I agree to be contacted and be invited to take part in for future research from other external researchers not involved with this project*
  • I agree to the research team contacting Services Australia to access my Medicare and/or PBS claims history*

  • *Note: Please complete the additional Services Australia Participant Consent form

    • Services Australia 

    • Consent to release of Medicare Benefits Schedule (MBS) and/or Pharmaceutical Benefits Scheme (PBS) claims information by Services Australia to University of New South Wales (UNSW) for the purposes of the National Endometriosis Clinical and Scientific Trials (NECST) Network Registry Study.

      Important information:
      Complete this form to request release of your personal Medicare claims information and/or your PBS claims to the NECST Network Registry study.

    • Rights and Privacy: I understand that (Select all that apply):*
    • Consent:*
    • Authorisation : I authorise Services Australia to provide the following for the period 01/01/2020 to 31/12/2040 to the NECST Network Registry Study.*
    •  
    • Date*
       - -
      2 digit day, 2 digit month, 4 digit year

  • DEMOGRAPHICS

  • What was your sex recorded at birth?*
  • How do you describe your gender?*
  • Were you born with a variation of sex characteristics (sometimes called ‘intersex’ or ‘DSD’)? DSD = Differences/disorders of Sex Development
  • What is your preferred contact method?*

  • MEDICARE CARD DETAILS

  • SECONDARY CONTACT

  • Relationship to patient

  • ETHNICITY, ANCESTRY AND LANGUAGE

  • What is your ancestry? (Provide up to two (2) ancestries only)*
  • Indigenous status*
  • How well do you speak English?*
  • Which language did you first speak as a child?*
  • Do you speak a language other than English at home?*

  • EDUCATION, EMPLOYMENT AND OCCUPATION STATUS

  • Highest education level completed*
  • Current employment status*
  • Full-time/part time status*
  • Employment type*
  • Occupation*

  • MARITAL STATUS AND GENERAL HEALTH

  • Current registered marital status*
  • Weight and height*
  • Tobacco smoking status*
  • Alcohol use*

  • Thank you. This concludes this questionnaire. Please click "Submit" to submit your response and to begin the next survey.

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